My husband has been tentatively diagnosed with PMR and just been increased to a dosage of 20mg after a hospital stay 5 weeks ago and trying to find a dosage that works. He has blood tests weekly to check on his liver markers which are coming down but still above a normal acceptable level. Has anyone else experience of this?
We have had to cancel one overseas trip because of the unknown and I am now wondering if we will be able to make another trip already booked to the UK from NZ next April.
Well they’re coming down, so that’s good. And repeat blood tests are monitoring.
I don’t think it’s unusual for pred to cause some liver issues, as in raised alkaline phosphatase (ALP). And that would lower as pred dose reduces. If there’s an existing problem, pred may exacerbate it (rather than cause it) such as fatty liver disease. It’s really a question for your doctor.
Is the 20mg dose working? He may need to stay there for 4-6 weeks to stabilise.
Were his CRP and ESR raised? (Inflammatory markers) what are they doing now?
Did he have thyroid and Vit D levels checked?
If this is a tentative diagnosis, what are the docs thinking the other possibilities are?
My hubby had crazy high liver enzymes some years back, that was due to glandular fever. They took quite some time to normalise.
I see that Soraya has an idea of what these liver tests might be all about. I imagine that your trip will be fine as everything should have settled by then. I would definitely have a stopover though, it is a very long flight isn't it. I have done the UK to Australia and back with uncontrolled PMR. Mind you, we went with Korean Air, it was so much cheaper than everyone else and we went Business Class which was very comfortable. PMR likes resting.
What liver markers are raised? Alkaline phosphatase is often raised in PMR but I didn't think others were.
I did a trip from the UK to the USA with undiagnosed PMR - but a rheumy who didn't think it was PMR did give me a 6 week pred taper which helped enormously (and confirmed my suspicion as to what I had, instant relief!). I've also been to S Korea, Australia, Canada, Japan, China with PMR - but on pred. There are limitations to what I do, but it can be managed as long as you don't want to climb mountains!
Thank you for your replies. Upping his dosage to 20mg is working well - he was out building a small stockyard yesterday! Working hard physically doesn’t seem to make him worse and he he is happier in his mind. Today will be resting.
Next appt is in 3 weeks so travel plans in April will be discussed. It is heartening to see the Dorset lady travelled to NZ recently so with 3 day stopovers both ways the travelling looks doable at this stage.
To up or not to up ?
Leflunomide and PMR
Pre-Christmas Coffee and a Catch Up, at St. Pancras 
UGH...UP TO 60 MG PRED
